“To the world you may be one person, but to one person you may be the whole world”

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Autoimmune, neurological and inflammatory diseases, are a varied group of conditions, which involve almost every human organ system and share many similar symptoms.

Unlike cancer, which is an umbrella term for a range of diseases, auto-immunity has yet to be wholly embraced by the medical community, and the public, as a category of diseases.

Even though there is some universally accepted knowledge about auto-immunity its victims, mostly women - have suffered from a lack of focus and a scattered under-funded research approach.

Diseases & Conditions


















 





Awareness of new and novel treatments

The pharmaceutical industry is approaching a “patent cliff” whereby the strong market position it currently holds is set to decline over the coming few years.

Most drugs that have currently been approved for use have been researched and developed not by “big Pharma” but by the smaller pharmaceutical companies.

Medicines


Neurological diseases and disorders are the result of damage to the brain, spinal column or nerves, caused by illness, injury or genetic process. Many of the precise causes of neurological conditions are either unknown or not well understood.

Some neurological conditions may be life-long and people can experience onset at any time during their lives. Neurological conditions/disorders can be present from birth while others commonly appear in early childhood, whilst others affect mainly older people.

Diseases/disorders will cause deterioration over time, affecting a person’s quality of life and their ability to live independently. Some can be life threatening, whilst others cause life-long disability.

Many neurological diseases/disorders, even relatively common conditions, are poorly understood and levels of awareness in the public eye are low, or they are ignored, . Also there are a large number of rare conditions which are largely unheard of by the public and amongst many health and social care professionals.

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The Proventus Project

Turning information into knowledge



When we share a common language, we're able to communicate with others and there is no lack of standardised vocabulary for clinical terms.         


However, there is no vocabulary of the words that are used by people to describe their illness, their experiences and what it means to them.



We need to change that?



Disease modifying drugs are given a clinical score by health professionals who generally will see a person with a chronic condition as a number rather than a human being.

Health professionals may generate a prescription for a medication against its considered efficacy as opposed to it's proven efficacy.

An often neglected point is whether a particular medicine, whose clinical trials score apparently show improvements, will actually help in improving a persons Quality of Life

Improved clinical trial parameter scores should be set against whether the use of any medicine will add to a persons quality of life.

That is for them to actually be “feeling better”.


Medicines


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Inform People. This is providing information, that is believable, not for profit and free available to be shared by all. If you have information or tips to share that may benefit others please share and we will ensure that it is made available on our website for others to share - Your Say





Social Networking - People who have a neurological, auto-immune or inflammatory disease or disorder or a combination of such conditions, their family and friends and fundraiser's who follow or link with Proventus are listed on this website under social media, unless they request otherwise? Contact Us


The link up pages are intended to enable like minded people to be able search, find people who have a disorder the same or similar to theirs.





Being a good communicator is a skill and some are better at it than others, but it is a skill that can be learnt and may go some way in helping those who have to be told bad news.


BUT - there are always exceptions to the rule and some health professionals, for a variety of reasons, are unable to  communicate well, generally they lack empathy which leads them to present a diagnosis in what may appear to be a very unhelpful manner.


There is no easy way to give bad news









 

A Guide To Representing

Yourself in Court (UK) - pdf


Motor Neuron Study Criteria


We need to change that?


We need to change that?


I fear the day that technology will surpass our human interaction "Einstein" - pdf

The Proventus Project an organic work in process that is constantly being added too. About Us

Health professionals - Looking down is always met with the anxiety of people who have to look up. Elites may be sitting snugly and securely in their own little world, but do they underestimate the advantages that helped them along the way whilst overestimating their own contributions to their status. They may not be wrong to think that for them there is much more to life than the daily struggle the many other people who have chronic diseases experience. What they do not see (or care to see and understand) is that for others a seriously compromised quality of life is the new normal.



Democracy - We are not all in this together, we are only lead to believe that we are. We must stop conflating moral arguments with economic ones. We must stop ignoring people who have chronic conditions. We must stop putting profit before cure. We must question those large national and international charities who rake in billions of Pounds, Dollar’s Euros etc. each and every year (money in does not equate with money out). We must question and take to task Governments and other elected bodies voted in by the people to supposedly represent them. We must question the misuse of tax-payers money and the seemingly profiteering that accompanies it. Nobody pays except the ordinary day to day citizen  that is about 95% of us, the rest of the world is owned and run by the remaining 5%


Which world would you rather live in? For us the answer is obvious.